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I don’t think I’ve updated about Max’s allergies in a while and everything is sort of whizzing by in a big fog of crazy days and nights, so I thought I’d better commit pen to paper – or hand to keyboard – before he’s 30 and I’ve forgotten all about food trials and nappies and all that faff.

Super quick summary for the uninitiated:Max was diagnosed with FPIES at six weeks old, a condition in which there’s a delayed internal reaction to food proteins. His initial trigger was dairy which caused us a five-day hospital stay. We were also advised to avoid soya. I stopped eating both while I expressed for him – he was combi fed so he also had special formula. When we began weaning after a while we were advised to do food trials where one new food is introduced each week. Thankfully we had lots of passes so while there are a few things he hasn’t tried, we haven’t been trialling for a couple of months as he eats a fairly ‘normal’ diet aside from soya and dairy.

We had two goes when he was first weaning of introducing soya, both unsuccessful, so we decided to hold off a bit and then the time came when everyone was happy for us to begin trialling again. The idea was to use a ‘soya ladder’ where you begin with foods which have a small amount in, building up to soya yoghurt/milk. First time of doing this was around three months ago perhaps and resulted in some horrendous, horrendous poos and disrupted sleep. Fine said the dietician, try him every other month with it.

I have been putting this off and putting it off. Partially because he went through a huge phase of not sleeping so we wouldn’t have been able to tell if he was reacting or just going through this leap he had been going through anyway. Anyway we bit the bullet last week and bought some Pom-bear type crisps which are step one of the ladder.

Day one there was a weird poo, which happens with babies from time to time so we didn’t think much of it. Day two he slept appallingly – again it’s been known to happen without any cause so we kept on. Day three and as soon as a horrible poo happened, we called off the trial straightaway (and whaddya know he slept terribly again that night! Slept isn’t even the word for it. He was thrashing around all night next to me on the sofa like an eel being tortured). The constant crying, moaning, being grumpy and clingy was also not a great side effect.

So for now we want to say ‘enough’. He has such a varied diet because he’s got so many safes that we don’t feel there’s much, if anything, to gain from him being able to eat soya – and if the professionals want to contradict that then they should find ways to give him whatever magic nutrients soya is supposed to give without him having to suffer going through trials. Now we want to wait until he’s at least two (end of next March) before we try again – at least then he might be able to give us an idea of whether his tummy hurts if it does.

We often follow health professionals’ advice because they do know best in a lot of situations. But I really struggle with the idea that he’s going to be magically ‘cured’ and be downing soya milk by the pint in two months. If he starts doing well with step one of the ladder when we try again next year then great! Fab! We’ll be chuffed. Avoiding soya as well as dairy is awkward so it’d obviously be happy days if he gets over these reactions. But when your child is screaming at 2 in the morning because they’re uncomfortable it’s not hard to see why you wouldn’t be keen to repeat the process in eight weeks’ time!

Not going to lie, I am slightly freaking out about the fact my tiny little baby is one in under three weeks!

I feel like he’s really progressed in the last months and has come on leaps and bounds. We are so proud of him. I know everyone is proud of their children, and I know a lot of children have things going on which affect every single aspect of their lives in a much more profound way; but our little boy has faced every challenge with the biggest smile on his face and to look now at his pictures in the very early days when he was so tiny, fragile and poorly: he’s unrecognisable now. We’ve never shared any of the pictures of him when he needed help breathing or was having jaundice treatment or was surrounded by wires (I think the earliest ones which have gone on social media or here are when he still just has his feeding tube in), but looking back at them now shows us how strong Max was and is! He’s a dude.

So, having looked at last month’s update there are a couple of quick things to say and then certain things I’ll go into in more detail:

Three new teeth, making a total of five!

Sleeping really well – we’ve had two nights where he’s not stirred at all for around 12 hours and most of the other nights it’s only been once or twice for his dummy. We need to get rid of it soon but I’m trying to put it off for a little longer! (Except I wrote this last week and then we had a couple of awful nights thanks to cold number 27464749 of the winter)

Routine is pretty much the same except he’s dropped his 11am bottle so just two left now.

He’s pulling himself up to standing and climbing constantly now! He can go from lying down to sitting up and has also cracked sitting up totally now. Still commando crawling although he can move forward for about a second on his hands and knees before going back to commando style again.

The first thing I wanted to talk about a bit more extensively is his speech. We noticed from very early on he had a great range of sounds and ‘talked’ a lot more than his sister did at that age. I’m still not totally sure he realises what certain words mean but he’s definitely learning that he gets a reaction from saying sounds at particular times. Having said that, in the last week or so Max is saying ‘daddy’ a lot when Dylan comes in the room or in his general direction, and he doesn’t say it to me, so it could be that he’s learned who daddy is. He also says ‘hiya’ a lot which is super cute (especially when accompanied with very enthusiastic waving) and ‘yeah’. I’m totally okay with him saying daddy first, especially when I hear ‘mommmmm mommmmm mommmm’ a trillion times a day from his sister.

And lastly, the big one with Max is always how his food is going! In his ten month update, we were trialling pear which was a pass. Also added to the safe lists this month are some really good foods: rice (so handy as it opens up some cereals and rice cakes as well as – of course – rice itself and he LOVES it), banana (again handy for snacks, he eats an entire one at a time because he loves them so much) and eggs (a high risk food but another great one for him). We have a tentative pass on chicken because it caused some nappy issues (although we are now thinking it could have been teething?) but no sick so we think it might be okay but will need to keep an eye on it when he has it in future. Last week he passed oats – this was on the request of the dietician who thought he could benefit from more calcium so he’s been having Oatly custard – and beef. This week we’re doing peas and then in a few days we’ll try corn.

We saw the dietician two weeks ago and she was very pleased with him – he’s got a very long list of safes in their eyes and is passing medium and high risk foods which is great news. They want him to trial dairy in hospital when he turns two rather than at home, which would be my preference too and they also want him to carry on having formula until he’s two. He now weighs 18lb 4 which is still on the smaller side but he’s putting weight on consistently so they are chuffed with that!

10 months old! I am still firmly pretending Max is a newborn (and his nappies still say newborn on the pack, so I must be right yes?) but he is in fact much closer to being a toddler than I care to admit!

Teeth: Two! And lots of rooting round as if there’s a new one coming through pretty soon.

Sleep: This has got a lot better since my post a few weeks back about how awfully he’d started sleeping. We’re now firmly making sure he goes down at around 7pm but no later than 7.30pm which seems to help and we’ve moved his afternoon nap later so he’s not overtired in the evenings. On average, we get up about 5 times a night now but it’s without fail just to put his dummy back in and maybe some teething gel on – fingers crossed we’ve had a couple of weeks now where we haven’t had to rock him back to sleep or spend hours trying every method under the sun to get him to settle.

Routine: Up about 7.30ish but can be later, breakfast around 8/8.30, nap around 10-11, bottle at 11, lunch at 1, bottle at 2.30/2.45, nap around 3-4/4.30, dinner at 5, bottle at 6.30, bed at 7ish.

Food: Max is doing amazingly with his food trials so we’ve reduced the last couple to six days with the hope of reducing further to five days for each new food. We now have 18 safes (lamb, salmon, pineapple, apple, plum, peach, blueberry, strawberry, avocado, cauliflower, broccoli, carrot, parsnip, tomato, white potato, sorghum, wheat, coconut milk/yoghurt). Wheat has been a great one for him to pass as it’s opened up some bread to us (only specific ones as most contain soya, but it’s nice to see him chewing on a bagel!) as well as different cereals, pasta and cous cous. We’re trialling pear this week and also trying to concentrate on introducing some finger foods (using his safes, so giving cut up fruit or some bread) as well as cutting up food rather than giving it pureed so he gets used to more textures.

Bottles: Max now has a bottle of expressed breast milk (5oz/150ml) in the morning then two bottles of formula, I switched his afternoon one from EBM to formula in readiness for me stopping pumping next week – with the stash I’ve got in the freezer it means he can continue having one bottle of EBM each day until his first birthday. If he’s still needing a follow-on formula at this point (I think they’ll recommend that) then I’ll feel okay that he had some breastmilk for an entire year.

Lungs: We are thrilled, thrilled, thrilled that we had a follow-up appointment and X-ray at the hospital where he had his operation and his right lung has expanded massively since his last X-ray in June. That means his diaphragm is pretty much where it should be and there’s no evidence of reherniating. The surgeon was so happy with him, he doesn’t want to see Max again for another year. I mean, I know we all like to share how great our kids are doing when they hit their milestone but growing your lung capacity by almost double in six months is pretty special. Well done Maxi!

Playing: Max definitely has a preference for ‘hard’ toys over cuddly teddies. He loves sharing his sister’s Lego blocks, tea set and cars. He also has an inflatable farm-themed ring from his cousin which he absolute delights in climbing in and out of. Oh yes, we have another climber. He’s discovered he can get over things now so I’m sure it’s only a matter of time before I’m rescuing him from high up places – it’s like raising a colony of monkeys sometimes.

Long term readers of my blog will know I breastfed my first baby for just under a week before switching to formula for a variety of reasons not limited to her generally being terrible at feeding and me being incredibly unwell. She thrived on formula, started putting on weight, importantly didn’t become jaundiced again and has been on the 75th centile since she was a few months old. She’s a happy and healthy toddler who (touch wood) we’ve only ever taken to the doctor’s once and that was just to confirm a little rash was indeed viral as we suspected.

This time round I decided I’d quite like to give breastfeeding a go again. By the time he was a few hours old, Max was on NICU so I was advised to begin hand expressing for a couple of days then move on to using a pump. I welcomed the chance as it meant I could do something useful while the doctors, nurses and machines were doing their own extremely important jobs.

Fast forward to him being two weeks old and they were happy he was tolerating being tube fed following his surgery, so we could begin feeding him orally. That evening I opted to try him with a bottle of my expressed milk and he took to it so well we carried on doing it that way rather than him breastfeeding directly.

Skip to six weeks and Max was back in hospital after becoming incredibly unwell after we were advised to begin introducing formula as he wasn’t putting on weight quick enough. Three days into that stay and we were given a diagnosis of a severe dairy allergy and told it was likely he’d also react to soya. So I had a choice – either I could stop expressing and we could rely solely on prescription formula or I could cut out these things from my diet.

I chose the latter, not realising at the time how many things have dairy or soya in them! Dairy on its own isn’t too bad (apart from crisps – why do so many crisps have milk in them?) but so many of the alternatives have soya in that trips to the supermarket are no longer about choice but about having to have the one thing available.

I wasn’t allowed to give Max the expressed milk I had in the freezer and because I’ve had blood transfusions in the past I can’t donate my milk to an official milk bank but luckily I found a lady through Facebook who was collecting expressed milk for her baby (who was born last week! Congratulations!) so I didn’t have to face the shit situation of throwing four litres of the stuff down the sink.

Of course, some people would say I don’t have the right to moan because I’ve chosen to go dairy and soya free. But I’d invite those people to come and see how well Max takes a bottle of my breastmilk compared to a bottle of formula. With his reflux (a side effect of his hernia), he struggles with too much formula – even the prescription stuff which is free from the things he’s allergic to – and he’s like a different baby now I’ve managed to increase my supply and only offer one or two bottles of formula a day compared to the four he was having previously. We deliberately don’t offer him formula overnight and he’s so much more settled because of that.

So that’s my dairy and soya free story. I don’t know how long I’ll express for – I’d like to get to six months but we know weaning will be a tough journey with this one so it may be I keep going with the boob milk as we know he can tolerate it, especially if he doesn’t outgrow his dairy and soya allergy (his paediatrician doesn’t think it’s likely). In which case next March will be my next taste of chocolate, pizza or milkshake!

Some tips for anyone who’s having to cut out dairy or soya, in terms of what I’ve found out there:
– Koko products are really good. Their yoghurts actually taste like real yoghurts! And their coconut milk is much tastier on cereals than almond milk, in my opinion.
– Doves Farm do an excellent range of Freee bars which don’t contain allergens. I was looking for an oat based product to help my supply so was thrilled to find these in apricot, apple and even chocolate flavours.
– Co-Op’s donuts! Neither their custard nor their jam donuts contain soya or dairy. Winner.
– Pringles. Lots of crisps contain milk but their plain and Texan barbecue varieties don’t (possibly some others but I haven’t checked up on all their offerings).

Do let me know if you’ve found any other great soya or dairy alternatives!

What a 100 days it’s been. We knew from the word go things were unlikely to be simple. Two lines showed up on the pregnancy test on Friday, September 2, just days after your sister turned one. Your dad and I stood in our bedroom for a while just looking at each other in shock.

We never had a conversation about what we would do. From that second you were my baby and we would take on the risks to get you here safely.

The next few months were filled with worry. We tried to carry on as normal and in general you gave me a really easy ride during the pregnancy with you – much more so than your sister who made me feel really poorly most of the way through. But sometimes we look at each other and panicked. Especially in the latter weeks, I spent so many hours lying awake in the middle of the night contemplating what might happen.

We reached 24 weeks and while we could breath a little sigh of relief that we had a chance at a ‘take home’ baby, utter fear took over every time I thought about what might happen in the weeks after your birth. Fast forward another eight weeks and there was a hospital admission and talk of early delivery.

I sat for ten days in hospital not knowing if I’d be coming out with or without you, pregnant or not pregnant. There was still a risk at this point your dad would be taking you home on his own. We avoided induction and even booked in a date for 37 weeks. But of course we didn’t make it that far and instead they decided at nearly 35 weeks we needed to get you out.

Holding you in my arms for the first time was the most empowering moment of my life. Many, many medical professionals helped deliver Alexandra but I gave birth to you without any extra assistance and I felt so strong in that moment. Looking at you it was like everything fell into place. A little hole in my heart was filled in and everything was complete.

I made your dad go with you up to the ward while I had to stay downstairs for a while. And then came the explanation that you’d showed a couple of worrying signs so you’d been taken to NICU. How could we know then the journey we were in for? You spent ten days on the unit with the incredible highs – getting to cuddle you for 15 minutes each on day four, being extubated both times, starting tube feeds. And the crashing lows – being told you needed to be ventilated, hearing your pained cries as you struggled to breath, not being able to see your eyes for a week while you were having jaundice treatment, two lung collapses.

And then on day ten we had our answer. What was going on apart from the sepsis, pneumonia and jaundice. Congenital diaphragmatic hernia. Something I’d never heard of before but is now a common phrase I use. My baby boy had a hole in his diaphragm. It was action stations from then on as you were transferred to another hospital for your surgery.

An operation you absolutely powered through like the brave boy you’ve been since day one. Even the doctors couldn’t believe how well you recovered, getting home a week later when most babies would still be on a ventilator in intensive care.

And so we took you home and began our journey as a family of four with our bouncy active toddler and our tiny little boy. But the time we had at home getting to know one another was to be fairly short and you were less than six weeks old when you were admitted to our local hospital this time.

We kept calm at the time but looking back that night was terrifying. You were becoming more and more pale and cold and listless. The doctors had to abandon a planned lumbar puncture when you spaced out for a few moments. There was talk of transfer to a specialist hospital, of more surgery, of a potential liver condition.

But of course three days later we discovered the problem was an extremely severe dairy allergy. We were relieved in a way to finally know what was wrong with you and how we could make you better. So began a long process of getting dairy and soya out your system and once you were back on full feeds we had our happy baby boy back. I was so tired at this point having been up through most of the nights as you were so upset from being restricted with your milk, plus the machines and trying to express and a horrible camp bed. Your sister and daddy were down the road at home in an attempt to keep things normal for her. It was awful being separated again so after five days taking you back home was wonderful.

Since then you’ve dealt with so much more: reflux which we were told to expect you to have given your CDH, brain scans, X-rays, appointments. You’ve finally begun putting on weight and actually reached the 0.4th centile whereas before you weren’t even on the graph.

We don’t know what the future holds for you, whether anomalies on your brain scan will cause developmental issues, whether your dairy allergy will be lifelong, whether you will reherniate and face more surgery. We watch you every day for signs of your breathing deteriorating. I read the ingredients list three times on everything I eat just to check I’m
not exposing you to dairy.

But for all of the drama and tears and fears and hospital visits, I wouldn’t change it for the world. Your smiles are just incredible. Your cuddles are wonderful. Watching your bond with your sister grow each day is just the best thing ever.

Alexandra had to fight to get here safe and sound. Never did we imagine how hard you’d have to fight both in the womb and for the last 100 days. Miscarriage and stillbirth rates for APS sufferers are appalling, and CDH only has a 50 per cent survival rate so even without all your other complications, you are a miracle.

You and your sister have taught me so much. I never realised how calm, composed and strong I could be in a life or death situation. I never realised how intensely I could love another human being. I never realised how protective I could feel. How selfless I could be. How utterly devoted to a family I could be.

As I write this you’re sleeping on my chest and it feels like you were always meant to be here. I hope you never stop wanting to cuddle me. I hope you never stop smiling as beautifully as you do now. I hope whatever challenges life throws at you, over and above those faced by others, you continue to tackle them so bravely. I am so proud of you and I’m so thankful you came into our lives. You were meant to be Max. Meant to be.

So the time has come to talk about feeding! We all know the great breastfeeding/formula feeding is one of the big debates designed to make moms feel judged whatever side of the fence they fall on! You may also know if you’ve read previous posts of mine that I breastfed my daughter for just under a week before switching to formula, partly because she just wasn’t getting the hang of it and there was a worry she’d become jaundiced again and wasn’t putting enough weight on, and partly because I was very poorly.

This time round I’d decided I wanted to try and feed my son if I could. Then within hours of his birth he’d been transferred to NICU and was being attached to various wires and tubes so I was advised to start hand expressing and then on day 2 to start using the electric pump to build up my supply.

As it was, Max was partly tube fed for the first two weeks of his life while being nil by mouth on the other days. When it came to establishing feeding on day 15, I was told to essentially pop him on the boob and ‘see what happens’ although I was warned he was small so may not take to it. I tried on that day a few times but felt massively unsupported. I was sat in a room with a curtain around our section of it, trying to get this tiny poorly baby to attach himself to me. He was so tired he kept nodding off with the effort of it.

And I cried. I cried at every feed because it was bringing back all of the memories of trying unsuccessfully to feed Alexandra. I cried because I knew the only way we would get out of the hospital is if Max started gaining weight and he had to be having a substantial amount of milk to do so. I cried because I really didn’t know what I was doing – and neither did he bless him.

So when they gave me the option of feeding him from a bottle (still
my expressed milk), I took it. And he drank the entire thing straight away despite them saying he may struggle to do so because of his size. And from then on, I carried on expressing and giving him the milk from a bottle. I didn’t even try putting him on the boob.

When we were discharged a few days later, I knew his fast progress was because he’d taken to bottles so quickly and I wondered how much longer it would have taken for us to establish breastfeeding. Occasionally I thought I should have stuck at it longer but I figured he was still getting exactly the same milk, just from a different receptacle!

When we got home they said I could try breastfeeding there if I wanted to. Perhaps I would have done if he was my first but I couldn’t see a way to sit all day trying to establish breastfeeding when there was also a toddler to look after and SO many hospital appointments to attend. Probably once feeding was established, it would take less time than expressing but I couldn’t see a way we could get to that point?

Max is now on a mixture of my milk and a special Neocate formula since he was diagnosed with dairy allergy FPIES. I’ve donated the four litres of milk I’d got frozen from before I went dairy free. Max has 120ml every three hours which is a lot more than most babies his size, but he’s trying to catch up because he’s still the size of a newborn not a two month baby! So if I was able to express eight times a day I would probably be able to build my supply a little and solely give him EBM but it’s normally more like six times a day that I express and sometimes it has to be a quick five minutes rather than a full go, so that’s why we’re topping up with formula.

I don’t know how long I’ll carry on expressing. I felt like it was important for him to have my breast milk, more so because of him being prem and poorly. It would be SO much easier to transfer to just formula (have you ever tried looking after a baby and toddler on your own while expressing?!) but I don’t want to do that just yet.

I’ve only had one bit of outright negativity (I may talk about that separately) and the advantage is that other people are able to feed. So for example sometimes Dylan will be feeding Max overnight and I can go off and express – or even try and get some sleep.

Downsides are I do feel incredibly like a cow ‘milking’ myself all day and night!

After a five-night stay in hospital, which I talked about here, Max (and I) came home yesterday. It was an absolute relief to be back with Dylan and Alexandra and we got back just in time for a trip to the park before bed.

On top of his CDH (congenital diaphragmatic hernia), Max now has a diagnosis of F-PIES – food protein induced enterocolitis syndrome. This essentially is a condition whereby babies/children have a severe reaction to certain foods. Rather than have a rash or any external symptoms, they are affected internally.

Max’s symptoms that we noticed were: becoming pale and lifeless and white loose poos. He also had a low temperature of around 35 – something which he had when he was in hospital after birth too, acidosis, dehydration and was essentially presenting the symptoms of sepsis which is why they started treating him for an infection at first. Apparently all this, including the sepsis-like symptoms, is common for F-PIES as well as vomiting which he doesn’t seem to be hugely affected by yet.

People with the condition can be affected by all sorts of foods and some can only eat a handful of ‘safe’ foods. Hopefully Max is only affected by cow’s milk protein, although one in three also can’t handle soy. Many children grow out of F-PIES but there’s no way of knowing when or if this will happen.

Obviously Max starting to wean is a long way off, but generally the plan would be to try him on soy at some point and then if he tolerates that begin to introduce dairy into his diet. Best case scenario is he tolerates it and can grow up eating a normal diet. Worst is that he’ll have to avoid certain foods forever (but as the doctor pointed out, it’s quite lucky to have a condition where the cure is to simply not eat something). There is no medication which can help from what I’ve read, doctors simply have to treat any symptoms children present with when they’ve had a reaction.

While I’m still expressing milk for Max, I have to avoid dairy (the dietician said I could potentially eat soy if I wanted to, but I’m cutting that out too just in case as one in three seems a high number!) as even the small amount passed through breast milk can be harmful to him – although it was the higher amount found in formula which triggered his reaction on Friday. He’s also got special formula so if he needs top ups or I decide to stop expressing then he can safely have that as it’s made without cow’s milk proteins.

I’m sure we will document his F-PIES journey along the way as we know this is just the start of a long road – and weaning won’t be as simple as it was with his big sister Alexandra. But at least we have a diagnosis now and we can keep him well now we know why he became so poorly.